you have a PD nurse !!!
Still new here and its still somewhat confusing, I belong to several forums (mainly to do with motorcycles and they are simplicity itself. and use very common forum software. My Partner was "given " A parkinson’s diagnosis recently. she’s still a very fit 65 year old walks every day. Hills no problem and is a driven individual ( to a fault sometimes she works or does what ever the activity is till she drops) her symptoms a relatively mild so far An Arm tremor and leg occasionally ( more subliminal) I have not really considered myself to be a carer yet though the realisation is Now dawning ( I’ve never been the quickest off the mark) it is progressing, slowly so far. Anger figures a great deal, with the diagnosis and often, me.
We have a “sparky” relationship and have been together for 30+ years. in dark moments she wants nothing to do with me and doesn’t want me to be there overseeing her condition worsening. She’s no quitter and wont, but needs help and has a, often self induced, ridiculous workload, Grand children childcare, very tiring on two to three days a week to support our Daughter who’s husband is in the Army and often deployed. So a lot of the time she’s a single parent with a five year old and a baby of 1 &1/2.
i try to be supportive but works non existent post covid and i have long periods of being “in the way” at home. I’m hoping this is not an uncommon introduction to the condition arriving (“Given”) so would appreciate some sense of recognition to what were starting to go through. best rodbargee username has followed me around the internet AKA
Adam
Hi Adam,
We’re sorry to hear you’re still having some difficulty getting around the forum. You might find these videos helpful. As for the relationship changes that are occurring between you and your PWP Partner, you are certainly not alone in this experience, as you’re sure to learn from our awesome community. We’d recommend checking out this section of our website, as a starting point for the wealth of related data you’ll find with a quick search. And of course you are welcome to call us at 0808 800 0303 for a free and confidential chat with a friendly trained adviser. You needn’t be a Person With Parkinson’s and your questions needn’t be medical. They are able to help in a multitude of ways, and happily.
Please accept our best wishes and we hope you’ll come to find comfort in this lovely community.
Jason
Moderation Team
Hello rodbargee
I read your post this morning when I was awake way before any lark so please forgive any typos I may miss, I’m typing pre meds which is always a bit risky!!
As I read your post several things came to mind. First thing to say and please remember this is only my personal opinion, but whatever your views beforehand it is only when actually faced with a life changing situation do you find out how you really react. In such circumstances however anger is not uncommon among the myriad of emotions likely to be felt. I also think that a person’s basic personality type, in its simplest form this may be described as being a glass half full or half empty sort of person, can also impact on how a person copes and manages whatever that event was. Parkinson’s is no different to any other in that respect. From what you wrote of your partner I can only imagine how difficult it is for her to see herself as someone who needs help. She would seem to be a person who thrives on being busy, always doing something and not one who finds it easy to stop and just be. If this is accurate then I suspect a diagnosis of Parkinson’s would be her worse nightmare. It won’t be easy for her to adapt to a life with slower, inconsistent movement for example or recognising the need for pacing what you do, finding a balance between activity and rest and so on. She may see it as a loss of control maybe even a weakness and these can have a huge impact on how she may see herself, her self esteem and confidence. She may not see it like that but I suspect there may well be some truth in what I write. For me personally the main component in living with Parkinson’s is one’s mindset. For me that means staying positive, I don’t let Old Parky take top spot, it doesn’t define who I am as a person. My way isn’t for everyone. Some and I suspect your partner is amongst their number see it as some kind of war who use their energies to rage and battle against it all the way. That’s not my way but it is no less valid or effective than mine, it’s just different.
The reason for writing all that is to highlight some of the complexities behind the headlines if you like. Parkinson’s is a complex condition that affects everyone differently but it’s impact is also variable and person’s pre morbid personality and attitude to life will play its part in that and how each of us copes with it. If you can recognise these sorts of things that to be honest, are rarely included in any information or discussion on the subject, you may be able to better understand what is going on. As an example you write you have always had a sparky relationship so that will no doubt continue but the impact of Parkinson’s has the potential to make it sparkier (if there’s such a word) That she sees you as being in the way is a reaction that can often be seen when a couple reach retirement age and find themselves spending time together but over and above that it might be it means you see her not managing so well more often than if you were working, she may be embarrassed by this, it may be that if you are around she can’t deny what is happening. She may even be envious/resentful/ that you do not have the problems she faces and so on. Your own position of having limited or no work must be another pressure on you.
I realise that this does little to address your main issue in practical terms but I do hope thinking about things more broadly may provide an explanation or reason for what is happening and that this may in turn help you find a way forward that suits.
Good luck
Tot
2 Likes
thank you for the time you obviously took to read and [quote=“Tot, post:24, topic:25439, full:true”]
Hello rodbargee
I read your post this morning when I was awake way before any lark so please forgive any typos I may miss, I’m typing pre meds which is always a bit risky!!
As I read your post several things came to mind. First thing to say and please remember this is only my personal opinion, but whatever your views beforehand it is only when actually faced with a life changing situation do you find out how you really react. In such circumstances however anger is not uncommon among the myriad of emotions likely to be felt. I also think that a person’s basic personality type, in its simplest form this may be described as being a glass half full or half empty sort of person, can also impact on how a person copes and manages whatever that event was. Parkinson’s is no different to any other in that respect. From what you wrote of your partner I can only imagine how difficult it is for her to see herself as someone who needs help. She would seem to be a person who thrives on being busy, always doing something and not one who finds it easy to stop and just be. If this is accurate then I suspect a diagnosis of Parkinson’s would be her worse nightmare. It won’t be easy for her to adapt to a life with slower, inconsistent movement for example or recognising the need for pacing what you do, finding a balance between activity and rest and so on. She may see it as a loss of control maybe even a weakness and these can have a huge impact on how she may see herself, her self esteem and confidence. She may not see it like that but I suspect there may well be some truth in what I write. For me personally the main component in living with Parkinson’s is one’s mindset. For me that means staying positive, I don’t let Old Parky take top spot, it doesn’t define who I am as a person. My way isn’t for everyone. Some and I suspect your partner is amongst their number see it as some kind of war who use their energies to rage and battle against it all the way. That’s not my way but it is no less valid or effective than mine, it’s just different.
The reason for writing all that is to highlight some of the complexities behind the headlines if you like. Parkinson’s is a complex condition that affects everyone differently but it’s impact is also variable and person’s pre morbid personality and attitude to life will play its part in that and how each of us copes with it. If you can recognise these sorts of things that to be honest, are rarely included in any information or discussion on the subject, you may be able to better understand what is going on. As an example you write you have always had a sparky relationship so that will no doubt continue but the impact of Parkinson’s has the potential to make it sparkier (if there’s such a word) That she sees you as being in the way is a reaction that can often be seen when a couple reach retirement age and find themselves spending time together but over and above that it might be it means you see her not managing so well more often than if you were working, she may be embarrassed by this, it may be that if you are around she can’t deny what is happening. She may even be envious/resentful/ that you do not have the problems she faces and so on. Your own position of having limited or no work must be another pressure on you.
I realise that this does little to address your main issue in practical terms but I do hope thinking about things more broadly may provide an explanation or reason for what is happening and that this may in turn help you find a way forward that suits.
Good luck
Tot
[/quote]
Thank you for your reply which is well thought out and I suspect right on the money, It is indeed a steep learning curve for both of us, and i will endeavour to take the wider view. watch this space… Adam